Articles
In October 2008 we were fortunate enough to have Dr. Ted Rothstein come and speak to our group thanks to one of our members, who is also one of his patients, who was able to arrange for him to visit us. Those of us who heard him speak were so impressed because he spoke to us at our level and explained things so clearly. He also shared an article he co-wrote and it's one of the best articles I've read.Dr. Rothstein's article
In June 2011, Bill M. read a moving piece that someone with Parkinson's in our group wrote about the difficulties of living with PD. Our thanks to both the author of the essay for sharing it with us (below).
I can’t speak for my fellow PD sufferers, but these are the things that I wrestle with daily with Parkinson’s: Will I make it to the bathroom on time? Why isn’t my new medicine working? Can I make it up the stairs to my bedroom tonight, or do I sleep on the living room couch? Or sleep on the floor, on a carpeted spot where I drop and fall to my knees and declare to myself that I don’t have another step left in me. I awake at 3:30 a.m. most nights because PD robs you of your sleep, leaving you only 3-4 hours a night. I step onto the floor and stand, quickly realizing that I can’t step forward until I “remember” how walk. If that doesn’t happen, I drop and crawl. The dogs look at me suspiciously as I slink across the dark room on all fours, looking like a wild panther on a nocturnal search for food. As I crawl past her, my wife sleeps in peace. Later that morning I am to speak to a roomful of people. As the meeting is about to start, I notice my mouth dries to cement, my breathing races ahead of me, and then I freeze. My legs, my face both lock up and I can’t speak. Finally I mutter a few sounds, but nobody seems to hear or understand. My face is unable to show any emotion, the “stone face” that appears as one of the first symptoms of PD (along with the loss of your sense of smell and not blinking your eyes). Standing in front this room, I notice that I’m so tense and rigid that my veins pop out of my neck as if being strangled. When I swallow I look like a long necked goose swallowing a toaster. I did finally make it through the meeting. Experiences such as this have totally eroded my confidence in my ability to talk and communicate (I have a BA in Communication Arts, and was a radio announcer for 10 years…this stuff should come easy to me.) People with PD often lose their confidence in their speaking abilities, and will withdraw from social interactions, events, nights out, dates with your spouse, and life in general.
These are my daily battles. Like the Roman soldier, I often feel my goal is simply to survive so I can live to fight another day. One more thing: I can’t read any more since Parkinson’s. Reading great books was one of my great life pleasures.
It’s often said that fighting these daily battles (after all, it is a war) will change your perspective. That’s true. However, it does a lot more: It gives you a new life for a second chance at things. We come to the new realization that life is different than what we first thought. Life is shorter now, and we now know that there is a thin veil between this world and the next, that all of us will step over that threshold sooner than we thought. Once you know this, you are changed. You think of people differently. I know longer have time for anger, petty squabbles, worries, or fears. I don’t have the desire or time for Chain Restaurants, Chain Malls, or Chain People. I no longer give my time over for the TV news and their nightly fear alarms, or the bashing of each other’s beliefs or politics. Parkinson’s enables you to see pretty clearly the road ahead of you. And you keep to that road, not stopping at the cheap roadside attractions that will serve no purpose to us. Keep moving, stop only for what is good and true, sincere and noble. You now have a second chance. Keep moving.
